Chromosome 18q Deletion Syndrome:

When Ethan was only a couple months old he was diagnosed with Chromosome 18q Deletion Syndrome, which is a rare genetic disorder affecting 1/50,000 babies. 18q Deletion comes with a number of different medical diagnoses and no two cases are the same. While we have only been navigating the special needs world for 15 months, we are slowly starting to find our footing.


We want you to see our children for who they are, not what their diagnosis is


It’s important to remember that a diagnosis does not define a child. Ethan is the happiest, sweetest, loving soul I’ve ever met. He lights up every room! He is friendly and outgoing, he loves his sister, the wiggles and his stuffed dog. He laughs when you make silly faces at him and he loves to swim. While 18q- is something that is a part of him, these qualities are what really make up my son Ethan, not his diagnosis.

We want you to know that not all disabilities are visible


One of the most common things I hear when people find out that Ethan has a complex diagnosis is “you would never know by looking at him!” or “but he looks so normal!”. I completely understand the sentiment behind this, and the attempt to compliment my adorable child. However to us, it feels like you are downplaying our children’s disability.

Instead, tell us how cute our children are, and how lucky we are to have them because what parent could be offended by that?


We love teaching other children about differences


At first I used to get defensive when children would point or stare at my son’s helmet. But I shortly came to realize that they are just curious, and it was really the way their parents were handling it that was truly bothering me. Instead of telling your children it’s rude to stare, take this chance to teach them about differences. We would welcome the opportunity to help your child learn about ours, so asking questions is a great way to engage with us. It also helps our children feel included.

We are highly protective


Every parent is instinctively protective. It’s innate in our biology. But when your child is even more vulnerable, this protective instinct is heightened. In addition to the typical parental worries, we have the added worry of how our children are treated, spoken to, and looked at. We are highly protective because we know they are medically vulnerable, and we know what can trigger medical events in them. So if we are being difficult when we request for certain food not to be served at an event, or certain noises or toys to be minimized, it’s because we are doing so with the protection of our children in mind.

Sometimes we Need Help

When you are a parent to a child with extra needs, some of the most difficult aspects of parenting become magnified. Casual trips to the store fill us with anxiety about what could happen, doctors appointments are more frequent and comprehensive, and when our children are sick they are often REALLY sick. Even the simplest acts of help, can make a big difference to us. So if you have some extra time, to lend a hand, cook a meal, or look after our other children for an hour or two we always appreciate it!

We didn’t forget you

Parenting a child with diverse abilities can be lonely and exhausting. It is so difficult to find people that you can relate to and who understand exactly what you’re going through. Sometimes it hurts to spend time with families who have typical children. This is because once we get our children together, all of our children’s struggles become glaringly obvious. We know it’s important not to compare our children, but when they are right next to each other it’s hard not to. That doesn’t mean that we don’t want to see you, but just that if we are having a difficult day, we may not have the energy to face that type of reality, so having friends who understand this is integral to our survival.

We are SO BUSY

Please don’t hold it against us if we haven’t texted you or returned your call as promptly as we used to. Some of us have therapy appointments every day, mixed in with specialist appointments. Some of us have IEP meetings, and prep for IEP meetings. We do research every spare chance we get and when we aren’t busy with one of those things, we are working hard on our children’s therapy goals. An unanswered text doesn’t mean we don’t value your friendship, but rather, we are just so busy we forgot. Try reaching out to us again, I promise we actually appreciate the reminder!

We need encouragement, rather than pity

Of course any parent to a child with extra needs would wish away all the hurt, struggle and pain, but this doesn’t mean we don’t love our children for exactly who they are. Most people don’t understand how much a child with different abilities can teach their parents, and all of those who get the pleasure of interacting with them. So try to encourage us and our children, rather than pity us. We love our children exactly as they are, but at times we struggle, and encouragement is exactly what we need to keep pushing on.

We worry a lot

Every parent worries, especially new parents, but we spend a lot of our lives worrying. We spend hours researching our child’s diagnoses, worrying about them medically, and about leaving them in another person’s care. We are constantly at war with ourselves worrying that we aren’t doing enough, or that we have missed something. We also have the added stress about our child’s future. While most parent’s worry about if their child will succeed in school or make friends, if they will get married or find a successful carrier, we worry we will outlive our children…and we also worry that our children will outlive us.

Don’t treat us like saints

I think it’s natural instinct when you see someone going through something difficult to think “there’s no way I could possibly do that!”. But the truth is you could and you would, if the circumstances were different. Of course parenting a child who has a lot of extra challenges is difficult, but we are really no different than other parents. We all have the same goals, and that is to do the best we can for our children, and to help them achieve their maximum potential.

Why we love Portage and Main:

Our lives are filled with therapy sessions, hospital visits and doctors appointments, so it’s important for us to find clothes that fit our lifestyle while still maintaining some style. Portage and Main is one of our all-time favorite kids clothing lines because it effortlessly bridges the gap between style and comfort. I never hesitate to grab a Portage and Main outfit for Ethan, no matter what we are doing. The clothes are so soft and comfortable, and a lot of them are tag free for kids with sensory issues or sensitive skin. Also the added element of hockey is perfect for our Canadian hockey family!


Written by: Jennifer Bothe for Portage and Main

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